gbrown
Active member
- Joined
- Jun 13, 2008
- Messages
- 77
- Reason
- PALS
- Diagnosis
- 07/2006
- Country
- US
- State
- Virginia
- City
- Bassett
My Road Thru ALS
Gordon Brown
August, 2001
Started experiencing falls. Had a few minor falls throughout the Fall of 01’. My legs felt like they were getting stiff.
December 2001
Had my first serious fall just before Christmas. Got out of the car and tripped over my feet. Couldn’t catch myself and fell face first into asphalt driveway. Didn’t realize it at the time but this was the start of my drop foot. I had a goose egg on my forehead so Mitzi took me to emergency room. They checked me over and found no permanent damage. The ER doctor did tell Mitzi that there was something else going on with me. Possibly MS or MD.
1st. Qtr. 2002
Experienced a few falls. My PCP, Dr. Eller, set up an appointment with a local neurologist, Dr. Chumblee. Had two or three visits with her and she ran some tests on me and diagnosed me as having Diabetic Neuropathy and put me on Backlofen and Neurontin.
2nd. Half 2002, and 03’,and 04’
Tried every cure all that came out or I found out about for diabetic neuropathy. Nothing was helping. I was getting progressively worse.
2005
Mitzi got me an appointment with Dr. Koch, who is a diabetes specialist with Carillon in Roanoke. I was still having balance problems and my hands were starting to deteriorate also. He suggested that I go to Dr. Stelmack and his team who are Neurological Physical Therapists. They treat spinal cord injuries and similar things. We went to the first appointment they assigned me to Dr. Trevor Chapman. Dr. Chapman set up, appointments with a physical therapist, an occupational therapist, and a speech therapist. It was determined that I didn’t need speech therapy at that time. I started going to the PT and the OT for an hour per day, three days a week, for the whole month of June. They showed me some exercises and got me a pair of leg braces, which helped me walk and not fall so much. I was also walking with a cane at the time. At the end of June, Dr. Chapman said that I definitely did not have Diabetic Neuropathy, but it was one of motor neuron diseases like ALS MS, or MD. He was leaning toward ALS, so Mitzi and I started getting ourselves prepared for it. That’s why it didn’t come as much of a surprise when I got the final diagnosis the next year.
2006
My PCP, Dr. Eller sent me back to the local neurologist here in Martinsville. She ran a nerve induction test and then suggested that get I get an appointment with Dr. DiNifiro at the Wake Forest University Medical Center in Winston Salem, NC. Dr. DiNifrio was leaving so Dr. James Caress was taking over the ALS department. They set me up an appointment with him in the middle of July and he ran a series of tests and then had me come back for a nerve induction test and an MRI. After all the tests were complete he officially diagnosed me with ALS. He said that they would be getting back with me shortly and getting me into the ALS clinic.
Dr. Eller put in an order for an electric hospital bed, a rolling walker, and a power wheelchair. I received all three by the end of 06’, without ever hearing from Dr. Caress.
2007
While still trying everything I could to help, I was still slowly but steadily progressing. I also started to have trouble swallowing and my speech was starting to get worse.
In July we got a call from Wake Forest requesting me to come to their clinic. When I got there Dr. Caress apologized for them not getting back with me. He said I must have fell through the cracks. They had me see all the therapists including speech, respiratory, physical, occupational, mechanical devices, social worker, the representative from the NC Catfish Hunter Chapter of the ALS association, and a complete exam by Dr. Caress and his staff.
My FVC was 35% of what it should be, so he requested that I be put on a BiPap, which I am still on today. Due to the BiPap and doing breathing and lung expanding exercises, my FVC is currently 51%. Dr. Caress also prescribed a Cough Assist machine to help with getting phlegm up from my throat. I was then put on a 3 month schedule to attend the Clinic. After a year of 3 month visits he put me on a six month visit schedule since my progression was so slow.
My walking got worse so Dr. Eller prescribed a Power Wheelchair for me. He also got me a hospital bed and a rolling walker. Mitzi got me a raised toilet seat and slide-in shower chair, which we had to pay for.
On August 23, 2007 I fell in the shower and decided to take the day off to recuperate as I had worked at my job up until that time. Mitzi went on to work to bring my PWC home and my boss was waiting at the door for her and he said that I needed to go ahead and retire as my speech was getting so bad that people were starting to have a hard time understanding me. She came home and told me what he said so I told her to tell ok and I haven’t worked a day since.
Since I was already 63 years old I could start drawing a reduced pension from Social Security. Mitzi went to the SS office and filled out the papers and I started drawing right away. She also applied for SSDI and I started drawing that in Feb. 2008.
2008
Mitzi and I both had been using the web to search for answers to questions and I had found a couple of websites with forums that you could ask questions that I visited regularly and still do occasionally but in early 2008 I found a website called Patients Like Me. I started visiting it daily and still do every day. I love being to talk with others who have this damnable disease. To be able to trade hints and tips for making life easier. To be able to find out what medicines or supplements other PALS have found useful. I am , and have always been the type person with the philosophy “If it ain’t broke don’t fix it, but if it is broke try to do something to help yourself”. Now, that may or may not be the best policy(Dr. Caress doesn’t think so, he says, “If it’s not proven scientifically then don’t try it”)` I say, “So what’s it gonna do, kill me? LOL, ALS is killing me anyway”. So I have tried a lot of supplements and treatments that other people have tried. Some worked and some didn’t. I recently sat down Dr. Eller and he decided which ones were good and which ones weren’t helping me. So I have pared it down to the following:
1. Omeprazole (Generic for Nexium) (Acid Reflux)
2. Beneazperil (Generic for Lotrel) (Blood Pressure)
3. Paroxetine (Generic for Paxil) (Emotional Stability)
4. Alpha Lopoic Acid (ALS)
5. Co-Q-10 (ALS)
6. Fish Oil (General Health)
7. Bio-Bead (Digestive System)
8. Resvertrol Complex (General Health)
9. Metformin (Generic for Prandin) (Diabetes)
10. Glycopyrrolate (Generic for Robinul) (Excess Saliva)
11. Flax Seed Oil (Digestive System
12. Vitamin B-12 (General Health
13. Stool Softener (Digestive System)
14. Regular Aspirin (Heart Health)
15. Niaspan (Cholesterol)
This medicine, I find helps me and causes no side effects.
2nd. Half 2008
The `Veterans Association made ALS a service related disease in 08’. So, since I was in the Virginia National Guard from 1963 until 1969 we applied for help from the VA and were turned down because of not being Active Duty. So we contacted Rick Corbett who is with the Roanoke, VA chapter of the Paralyzed Veterans Association. Rick got to work on it and after about a year and a half I was accepted for health benefits but not for financial compensation. I was also accepted for pharmacy privileges.
This has helped us greatly.
2009 Until Present
My condition has not progressed much since 2008. My voice has gotten a little worse and it is hard for people to understand me, even Mitzi. Dr. Caress put in for an Eco voice machine, which I use occasionally and will need to use it more in the future. Since being with the VA, they have been extremely helpful. They have furnished me with a new hospital bed, a new power chair, a new rolling walker, two new shower chairs, a bidet seat, and paid $2,000.00 toward having our bathtub removed and a roll-in shower installed. Of course, we had to pay the remaining $3,300.00, but every little bit helps.
There are a few things that I have learned during this process. One, you can’t go it alone without the help of family and neighbors, and friends, and especially God. Two, you have to learn to adapt to a different way of doing things. Three, you have to fight for your rights. There are a lot of crooks in this world and they love to take advantage of the disabled, the uneducated, and the aged people. We have met a few of them in the last ten years. Don’t get me wrong, there a lot of good people out there too, you just have to learn how to distinguish between the two. And, probably the biggest thing I have learned that no two people have the same progression. What works for one, may not work for another. The average life expectancy of a PALS, is 3 to 5 years. But, there are some who don’t last six months and there are some who last twenty years. Personally, I am one of the lucky ones, I have had it now for ten years.
People I Need to Thank
There are so many who have helped us so if I miss some forgive me. You know what they say, “When you get older, the first thing that goes is the memory”. Well, Maybe.
I would like to thank all the doctors that have helped me. Dr. Edward Eller who is my GP in Martinsville, VA. and his fine staff Dr. James Caress and his fine staff at the Wake Forest Baptist Medical Center in Winston Salem, NC. Dr. Chumblee, who is my local neurologist in Martinsville, VA. And, all the doctors and therapists at the VA, in Salem, VA.
Next, I would like to thank Rick Corbett and Kay Austin with the PVA in Roanoke, VA for helping us so much with the VA.
I would also like to thank Mitzi’s family, and neighbors Joel Ramsey, Ronnie and Donna Stone, Gloria Whorley, and Martha Peters and Herman Donovant for all their help.
I would especially like to thank, Kathleen Kelly and Colleen McGuire with the ALS Association in Rockville, MD for all their help financially, morally, and legally and for all their support.
And last but not least, I need to thank my loving wife Mitzi for all her support and help. We have been together for 22+ years and me with ALS for the last 10 years. She has not only been my wife, but my best friend, my lover and now my sole caregiver. Through he first 12 years she kept me going along the straight and narrow. And now she does everything. She not only has to take care of all my daily needs, she takes care of all the inside chores and all of the outside chores, including the mowing, the weed eating, the flowers and gardening. She does all the shopping, takes care of all the finances (and has since we met, it’s been so long since I wrote a check that I probably couldn’t even if I could still write), and she is very protective of me. Nobody messes with me when she’s around. She keeps the “BIG BAD WOLF” away from the door.
Well, that’s about it for now, I hope that I’m still around next year to write another chapter to this story.
Gordon Brown
Gordon Brown
August, 2001
Started experiencing falls. Had a few minor falls throughout the Fall of 01’. My legs felt like they were getting stiff.
December 2001
Had my first serious fall just before Christmas. Got out of the car and tripped over my feet. Couldn’t catch myself and fell face first into asphalt driveway. Didn’t realize it at the time but this was the start of my drop foot. I had a goose egg on my forehead so Mitzi took me to emergency room. They checked me over and found no permanent damage. The ER doctor did tell Mitzi that there was something else going on with me. Possibly MS or MD.
1st. Qtr. 2002
Experienced a few falls. My PCP, Dr. Eller, set up an appointment with a local neurologist, Dr. Chumblee. Had two or three visits with her and she ran some tests on me and diagnosed me as having Diabetic Neuropathy and put me on Backlofen and Neurontin.
2nd. Half 2002, and 03’,and 04’
Tried every cure all that came out or I found out about for diabetic neuropathy. Nothing was helping. I was getting progressively worse.
2005
Mitzi got me an appointment with Dr. Koch, who is a diabetes specialist with Carillon in Roanoke. I was still having balance problems and my hands were starting to deteriorate also. He suggested that I go to Dr. Stelmack and his team who are Neurological Physical Therapists. They treat spinal cord injuries and similar things. We went to the first appointment they assigned me to Dr. Trevor Chapman. Dr. Chapman set up, appointments with a physical therapist, an occupational therapist, and a speech therapist. It was determined that I didn’t need speech therapy at that time. I started going to the PT and the OT for an hour per day, three days a week, for the whole month of June. They showed me some exercises and got me a pair of leg braces, which helped me walk and not fall so much. I was also walking with a cane at the time. At the end of June, Dr. Chapman said that I definitely did not have Diabetic Neuropathy, but it was one of motor neuron diseases like ALS MS, or MD. He was leaning toward ALS, so Mitzi and I started getting ourselves prepared for it. That’s why it didn’t come as much of a surprise when I got the final diagnosis the next year.
2006
My PCP, Dr. Eller sent me back to the local neurologist here in Martinsville. She ran a nerve induction test and then suggested that get I get an appointment with Dr. DiNifiro at the Wake Forest University Medical Center in Winston Salem, NC. Dr. DiNifrio was leaving so Dr. James Caress was taking over the ALS department. They set me up an appointment with him in the middle of July and he ran a series of tests and then had me come back for a nerve induction test and an MRI. After all the tests were complete he officially diagnosed me with ALS. He said that they would be getting back with me shortly and getting me into the ALS clinic.
Dr. Eller put in an order for an electric hospital bed, a rolling walker, and a power wheelchair. I received all three by the end of 06’, without ever hearing from Dr. Caress.
2007
While still trying everything I could to help, I was still slowly but steadily progressing. I also started to have trouble swallowing and my speech was starting to get worse.
In July we got a call from Wake Forest requesting me to come to their clinic. When I got there Dr. Caress apologized for them not getting back with me. He said I must have fell through the cracks. They had me see all the therapists including speech, respiratory, physical, occupational, mechanical devices, social worker, the representative from the NC Catfish Hunter Chapter of the ALS association, and a complete exam by Dr. Caress and his staff.
My FVC was 35% of what it should be, so he requested that I be put on a BiPap, which I am still on today. Due to the BiPap and doing breathing and lung expanding exercises, my FVC is currently 51%. Dr. Caress also prescribed a Cough Assist machine to help with getting phlegm up from my throat. I was then put on a 3 month schedule to attend the Clinic. After a year of 3 month visits he put me on a six month visit schedule since my progression was so slow.
My walking got worse so Dr. Eller prescribed a Power Wheelchair for me. He also got me a hospital bed and a rolling walker. Mitzi got me a raised toilet seat and slide-in shower chair, which we had to pay for.
On August 23, 2007 I fell in the shower and decided to take the day off to recuperate as I had worked at my job up until that time. Mitzi went on to work to bring my PWC home and my boss was waiting at the door for her and he said that I needed to go ahead and retire as my speech was getting so bad that people were starting to have a hard time understanding me. She came home and told me what he said so I told her to tell ok and I haven’t worked a day since.
Since I was already 63 years old I could start drawing a reduced pension from Social Security. Mitzi went to the SS office and filled out the papers and I started drawing right away. She also applied for SSDI and I started drawing that in Feb. 2008.
2008
Mitzi and I both had been using the web to search for answers to questions and I had found a couple of websites with forums that you could ask questions that I visited regularly and still do occasionally but in early 2008 I found a website called Patients Like Me. I started visiting it daily and still do every day. I love being to talk with others who have this damnable disease. To be able to trade hints and tips for making life easier. To be able to find out what medicines or supplements other PALS have found useful. I am , and have always been the type person with the philosophy “If it ain’t broke don’t fix it, but if it is broke try to do something to help yourself”. Now, that may or may not be the best policy(Dr. Caress doesn’t think so, he says, “If it’s not proven scientifically then don’t try it”)` I say, “So what’s it gonna do, kill me? LOL, ALS is killing me anyway”. So I have tried a lot of supplements and treatments that other people have tried. Some worked and some didn’t. I recently sat down Dr. Eller and he decided which ones were good and which ones weren’t helping me. So I have pared it down to the following:
1. Omeprazole (Generic for Nexium) (Acid Reflux)
2. Beneazperil (Generic for Lotrel) (Blood Pressure)
3. Paroxetine (Generic for Paxil) (Emotional Stability)
4. Alpha Lopoic Acid (ALS)
5. Co-Q-10 (ALS)
6. Fish Oil (General Health)
7. Bio-Bead (Digestive System)
8. Resvertrol Complex (General Health)
9. Metformin (Generic for Prandin) (Diabetes)
10. Glycopyrrolate (Generic for Robinul) (Excess Saliva)
11. Flax Seed Oil (Digestive System
12. Vitamin B-12 (General Health
13. Stool Softener (Digestive System)
14. Regular Aspirin (Heart Health)
15. Niaspan (Cholesterol)
This medicine, I find helps me and causes no side effects.
2nd. Half 2008
The `Veterans Association made ALS a service related disease in 08’. So, since I was in the Virginia National Guard from 1963 until 1969 we applied for help from the VA and were turned down because of not being Active Duty. So we contacted Rick Corbett who is with the Roanoke, VA chapter of the Paralyzed Veterans Association. Rick got to work on it and after about a year and a half I was accepted for health benefits but not for financial compensation. I was also accepted for pharmacy privileges.
This has helped us greatly.
2009 Until Present
My condition has not progressed much since 2008. My voice has gotten a little worse and it is hard for people to understand me, even Mitzi. Dr. Caress put in for an Eco voice machine, which I use occasionally and will need to use it more in the future. Since being with the VA, they have been extremely helpful. They have furnished me with a new hospital bed, a new power chair, a new rolling walker, two new shower chairs, a bidet seat, and paid $2,000.00 toward having our bathtub removed and a roll-in shower installed. Of course, we had to pay the remaining $3,300.00, but every little bit helps.
There are a few things that I have learned during this process. One, you can’t go it alone without the help of family and neighbors, and friends, and especially God. Two, you have to learn to adapt to a different way of doing things. Three, you have to fight for your rights. There are a lot of crooks in this world and they love to take advantage of the disabled, the uneducated, and the aged people. We have met a few of them in the last ten years. Don’t get me wrong, there a lot of good people out there too, you just have to learn how to distinguish between the two. And, probably the biggest thing I have learned that no two people have the same progression. What works for one, may not work for another. The average life expectancy of a PALS, is 3 to 5 years. But, there are some who don’t last six months and there are some who last twenty years. Personally, I am one of the lucky ones, I have had it now for ten years.
People I Need to Thank
There are so many who have helped us so if I miss some forgive me. You know what they say, “When you get older, the first thing that goes is the memory”. Well, Maybe.
I would like to thank all the doctors that have helped me. Dr. Edward Eller who is my GP in Martinsville, VA. and his fine staff Dr. James Caress and his fine staff at the Wake Forest Baptist Medical Center in Winston Salem, NC. Dr. Chumblee, who is my local neurologist in Martinsville, VA. And, all the doctors and therapists at the VA, in Salem, VA.
Next, I would like to thank Rick Corbett and Kay Austin with the PVA in Roanoke, VA for helping us so much with the VA.
I would also like to thank Mitzi’s family, and neighbors Joel Ramsey, Ronnie and Donna Stone, Gloria Whorley, and Martha Peters and Herman Donovant for all their help.
I would especially like to thank, Kathleen Kelly and Colleen McGuire with the ALS Association in Rockville, MD for all their help financially, morally, and legally and for all their support.
And last but not least, I need to thank my loving wife Mitzi for all her support and help. We have been together for 22+ years and me with ALS for the last 10 years. She has not only been my wife, but my best friend, my lover and now my sole caregiver. Through he first 12 years she kept me going along the straight and narrow. And now she does everything. She not only has to take care of all my daily needs, she takes care of all the inside chores and all of the outside chores, including the mowing, the weed eating, the flowers and gardening. She does all the shopping, takes care of all the finances (and has since we met, it’s been so long since I wrote a check that I probably couldn’t even if I could still write), and she is very protective of me. Nobody messes with me when she’s around. She keeps the “BIG BAD WOLF” away from the door.
Well, that’s about it for now, I hope that I’m still around next year to write another chapter to this story.
Gordon Brown
